Headache on the Hill 2011: Migraine and Headache Advocacy

Nancy Harris Bonk Health Guide
  • I attended the fourth Alliance for Headache Disorders Advocacy's Headache on the Hill in Washington, D.C., last week. As a Migraineur and headache disorder sufferer I had a double challenge - to lobby Congress on behalf of all my fellow constituents in our district and state, and to attempt to stay Migraine free. I accomplished one out of two - the lobbying! It was my first time visiting the Capitol, the first time I'd meet my boss from HealthCentral in person and for the very first time I had a world renowned Migraine specialist invite me to email him! I was excited, anxious and a bit apprehensive. Let me tell you about it. 

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    Tuesday afternoon we all meet for an information and training session to learn the fine "art" of lobbying on Capitol Hill. In attendance were Migraine specialists, neurologists and patient advocates from across the country. I was thrilled to meet a number of wonderful doctors and very excited to finally meet (or see again) some patients and patient advocates I have worked with or spoken to over the years; Ellen, Julie, Heather, Janet, and Bray. The speakers during this session were Dr. Robert Shapiro - President, Alliance for Headache Disorders Advocacy and Migraine specialist in Vermont; Mike Amery - Legislative Counsel, American Academy of Neurology; Brian Kennedy of Woodbury Associates; Dr. P. David Charles from Tennessee. This session was devoted to the whats, whys, hows and whos we going to be dealing with the next day. I must say at first it all was a bit overwhelming and confusing; but when I heard the facts, yet again, on how poorly funded Migraine and headache disorders really are I was truly motivated. For example, there hasn't been a new novel drug approved by the FDA for Migraine in 49 years, there are only 290 US doctors that are board-certified by the United Council for Neurologic Subspecialties (UCNS) and the National Institutes of Health (NIH) funds MS, epilepsy, ovarian cancer and tuberculosis 45 times more than it does Migraine. In 2010, that was about $684 million dollars vs. $15 million dollars. And here's the kicker - The World Health Organization (WHO) shows that Migraine causes more lost years of healthy life in the United States per year than these four disease put together. This is just not acceptable.

     

    We were tasked to get responses for three "asks" (this is the term used when lobbying for something on Capitol Hill. Who knew?) from the various House and/or Senate members in our state and/or district.

    • The first "ask" was to request a Congressional hearing on Migraine and headache disorders in Washington before the close of the 112th Congress. This hearing would help examine how government and industry can play a role in conducting headache research, to better understand the total burden of headache and the personal, economic and social impact it has, look for more effective treatment and specialty care for these disorders. 
    • The second "ask" (to Senate only) was to co-sponsor bill S.597, which may help promote more medical students towards neurology. This bill would also add neurology to the list of medical specialties eligible for primary care incentives - because let's face it- we spend more time with our neurologists and Migraine specialists than with our primary doctors!
    • The final "ask" was to fully support the CURES acceleration network, which simply means writing a letter to fellow members stating their support. This is an already appropriated item; it just needs to be infused with funds.

    We heard a lot of support for the first two "asks" but no firm commitments for the funding. The recurring theme was "these tough economic times..."

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    I was fortunate to be able to spend the day with Migraine specialist Dr. Audrey Halpern from Manhattan and Iraqi war veteran James Wilkes. Dr. Halpern is extremely knowledgeable, well versed and patient friendly and had been to "the hill" before. Her expertise and insight were invaluable as we met with the staff members. Jim is now able to run marathons despite fact that when he returned from Iraq with extensive injuries, at one point he was told he wouldn't make it through the night! He is passionate about Veteran's health issues, improving his health, and doing it "his" way.

     

    The "staffers" we met with were a bit intimidating at first, but vastly keen and informative on each point we discussed. Two of our meetings were very different. During the first in Senator Gillibrand's office, we met with Special Advisor and Health Legislative Assistant, Karina Cabrera. Her office was overflowing with people coming and going, hoping to have five minutes with her. Ms. Cabrera was very upfront about her limited time, took the information, said "Yes" to the hearing, and funding appropriation, but would have to discuss supporting bill S.597 with Senator Gillibrand. We were in and out of her office in a flash. The third meeting with Kim Corbin, Legislative Counsel and Health Legislative Assistant for Representative Jerrold Nadler, seemed to start off a bit slowly. She was attentive, but made it pretty clear that, in these tough economic times, it may be hard to get even an already appropriated item funded, which was one of the "asks."  As Dr. Halpern relayed information and Jim told his story, her interest seemed to grow, which lead to a great discussion. Almost 45 minutes later (unheard of!), our meeting ended. We didn't get any commitments on our "asks," but did have some wonderful ideas on how to bring more Migraine/ headache disorder education and awareness to the members. Ms. Corbin did say she would discuss all our issues with Representative Nadler.

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    Orly Isaacson, deputy Chief of Staff / Legislative Director in Representative Carolyn Maloney's office was very welcoming. She even had a few questions about Migraine for a family member that we were happy to help her with. Ms. Isaacson said yes to the hearing "ask" and would discuss the appropriation item with Representative Maloney. Our last visit was scheduled with Representative Bill Owen from Jim's district, but we were unable to meet him because he was called for a vote at the last minute. We were however able to meet with his Legislative Director / Deputy Chief of Staff Nell Maceda. Another "Yes" to holding hearings in Washington, but she too would have to discuss the appropriations funding and couldn't give us a "Yes" or "No."

     

    It was all over by 3 p.m., but felt like 7 p.m. I would say it was a successful day, personally and for Migraine and headache disorders in general. 

     

    Thanks for reading and feel well,

    NancySig

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  • © HealthCentral Network, 2011.
    Last updated June 10, 2011.

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Published On: June 10, 2011